Friday, January 23, 2015

TOMORROW!

TOMORROW is our favorite day of the year - 
Iowa State's Dance Marathon!

I realized in looking back that I never blogged about last year's dM.  Probably because Blake was in the PICU and I took the other three.  It was hard to be there without Blake and Aaron.  Blake is the reason we are a part of dance marathon.  I remember thinking, this sucks!  Blake should be able to be there.  But, at the same time I thought, this is why these awesome college students dance for kids like Blake, at the University of Iowa Children's Hospital.

My biggest memory of dM 2014 was when they announced the families at the beginning.  At the last minute, I talked to Aaron about possibly face-timing with each other and holding up our iPad when we walked through the chaos that is the college students and the start of dM so the students could see Blake's face via the iPad.  It is a moment I will never forget.  I think if I see a movie reel of my most impactful life moments, this will be in there.

They announced us and up walked Jenna, Brody, Bowen and me holding up the iPad.  I panned the whole audience and the crowd went crazy and got so loud.  I couldn't hold back the tears.  Then, from the back I heard a, "We love you Blake!" (it ended up being from one of Aaron's former students and ballplayers!).  I was crying and as I looked around I saw so many students crying too.  It was just...one of those things.  

Here is last year's highlights.  If you have time, you may see a few familiar faces in it.  If you watch nothing else, be sure to watch the last 30 seconds. ;)

I have FOUR kiddos (and maybe me too!)  that cannot wait for tomorrow to get here!!!  

Monday, January 19, 2015

The way I see it...

A good report!
We had a great day in Iowa City last Friday!  I just felt like everything was going to be ok.  The sun was shining on the way down, I sent up a few prayers and I was just overcome with a huge feeling of positivity.

We started the day with an ultrasound of his bladder and kidney.  I feel like I should be able to read those things by now, but I’m certainly no expert.  I do know that I didn’t see any huge black masses, which is bad.  That means fluid and I have seen that awfulness before.

From there, we went to check his blood clot.  I just know when they light it up and there’s blue and red colors, that’s a good thing.  It means there’s blood flow.  I’m pretty scientific about my explanations, aren’t I?!

Then it was time for the urologist.  We had to see the resident first and he said he thought everything looked, “stable.”  I was slightly encouraged, but knew he didn’t have the final say, Dr. Kieran did.
Dr. Kieran came in and said his hydronephrosis (fluid around kidney) was stable to improved.  RELIEF!  I almost cried and I’m not even kidding you.

I love this doctor’s sense of humor and she just went off on a tangent that went something like this, “I don’t know how this could be!  I don’t know why he is able to pee.  He’s not supposed to be able to pee!  Maybe it’s because we used his ureter in the bladder reconstruction?  I don’t know.  This whole thing is just unorthodox, but I guess Blake is unorthodox, so let’s just go with it until his body tells us otherwise.  And I’m just going to say it, I don’t want to see you for six months.”

There was so much goodness in her rambling, I can’t even tell you.  I feel like maybe someday when she’s teaching her classes, Blake will be that one crazy urological case that she talks about.
From there, we headed for his iron infusion and to hear what hematology had to say.  That doctor said everything looked stable as well and unless he has another surgery, they would schedule a follow-up for six months.

Random selfie with my cute photo-bomber in-between appointments
Our kidney doctor couldn’t believe how tall Blake has gotten.  He is currently in the 70th percentile for height.  He used to be in the fifth percentile.  Blake is working his way up that growth chart.  Our doctor always used to say that if you give Blake a good kidney, eventually his good height genes would kick in and sure enough, she was right.

We are still doing labs monthly, but we are now seeing the kidney doctor every two months.
I think I was so emotional on Friday because I was thinking what kind of state Blake was in a year ago.  I mean, what a weak, sick, full of infection after infection kiddo he was.  And, here he was getting certain appointments spread out to six months!  Six months.  I can’t even explain to you how that feels.  After everything we have been through, it’s the biggest feeling of happiness and progress for that kid who has been through so much in his short life.

Slowly, but surely, we’re getting to a place I never thought we’d be and feeling so incredibly blessed to be here, but that’s just the way I see it.

 Blake picked this red nose out of the treasure chest after his infusion.  I asked him if he could give me thumbs-up for his good day and this is the awesomeness that he gave me. :)

Thursday, January 15, 2015

Loads of appointments

Tomorrow we head to Iowa City for a full day of appointments.  Blake has an ultrasound on the blood clot in his leg and also on his kidney and bladder.  Then, it's a consult with the urologist for results of the bladder/kidney ultrasound. 

I feel like Blake is doing great and he has given us no reason to worry.  But, at the same time, I know I'll be nervous until I hear the results from Dr. Kieran.  We so want him to be able to keep peeing like a regular kid and avoid the OR!!

From those appointments at Iowa River Landing, we head to the hospital for an iron infusion.  During the infusion, hematology will come talk to us about the results of the ultrasound on his blood clot.  Following that, Dr. Jetton will come for her check-up.  Whew!

A full day.  I swear it feels like you just sit.  Talk.  Wait.  Entertain a three-year old (or two), but between the appointments and the drive, it just wears you down.

Happy thoughts and prayers appreciated for good results tomorrow!  I'll let you know. :)

Tuesday, January 13, 2015

The way I see it...

Goals and Resolutions
I guess it’s that time of year when 90% of the population makes a New Year’s resolution. I know most people break them, but I’m a firm believer that it is good to have goals! I like meeting goals; it’s such a great feeling. And, sometimes I don’t, but it pushes me to work harder or be better the next time. 
I never have my goals and resolutions ready on January 1st because I’m usually still in Christmas-mode. Aaron  said he knew December 31st what his two resolutions were going to be, but he refused to share them with me until the 1st.
All day on New Year’s Day my mind was ticking away about what I could do. I thought about different aspects of my life – fitness, health, hobbies, my mental health… What did I want to accomplish?
Let’s start with the most obvious sort of thing that people want to do – improve their health. This is something that for me is a continual work in progress. Ever since thinking I had the possibility of being Blake’s kidney donor, I have been very conscience of my health.
My knees and hip had been hurting me, so I haven’t been running since September. That affected my fitness goal. I wasn’t sure what to do since I couldn’t do a certain mileage. I decided to do minutes of activity – walking, workout videos, whatever. I’m shooting for 1,000 minutes per month, which is about a half hour a day. I’ve been getting pretty close, so if I push myself just a little more, I can do it.
Because of my vast knowledge of the good old kidneys, I know that so much of our health can stem back to simply not having enough hydration for our bodies. “They” recommend 64 ounces a day. I’m going to set my goal at 96 ounces of water per day, which is three of my water bottles. As long as I carry it with me, I should be good to go!
I saw on social media that people were posting reading challenges that they wanted to do. As I’ve told you, ever since this summer, I have made it a point to read more, because I truly do love it and it is such a stress reliever for me. I found a 26 book reading challenge that gives you prompts of what books to read throughout your year. Here are some examples: a book you own, but have never read; a book set in a place you would like to visit; a book you picked-up just because you liked the cover; a book that was made into a movie. You get the idea. I started my first book and can’t wait to see if I can finish this challenge.
The next challenge is going to be a, well, challenge. I really want to learn how to sew. You might remember a few years ago I wrote an editorial about how my husband made curtains for our house because I can’t even thread the machine? Yeah, still no change in that department. I really, really want to be able to make pillows and curtains for my kids’ room. This, to a normal person, shouldn’t be hard at all. To Jamie, this will be like climbing Mount Everest. I have a lot of talents, but I can whole-heartedly admit that this isn’t one of them. We shall see how this goes…
Finally, my sister-in-law gave me an idea about journaling more. I have no idea what she’s journaling about, but I wanted to start a journal where I write down one good thing about that day. That way, at the end of the year, I can go through and see short little happy glimpses of our days.
That’s it. My goals and resolutions for 2015! Whew. Time will tell if I can achieve these, but you never know until you try, but that’s just the way I see it.


Sunday, January 4, 2015

Christmas Numero Dos

We celebrated Christmas, just the six of us, on Christmas Eve and Day.  The weekend after Christmas we headed to Omaha for our Christmas with the Burdorfs.  

Noah and Brody were buddies.  It was so cute how Noah followed Brody around. :)
 The boys could be found a good chunk of time in the basement shooting baskets and "dunk slamming" as they kept calling it. 
 I was in like flynn with Noah when I kept lifting him up to dunk it. 


 We ate.  Just a little.  Haha.  What are the holidays for?!
 Blake was scoping out the pickles. 
 We had to have a Wii dance break on Saturday afternoon.  It allowed the kids to burn off some energy.  Who doesn't love some One Direction?!
 Adam and Jill were the best host and hostess.  We didn't starve.  Not even a little bit.  So...much...good...food!!
 This was their pride and joy - a spatchcocked turkey.  Yep, you read that right!  Such a yummy way to cook it. 
 
 Miss Aubrey.  What a sweetie.  She was such a little cuddle bug and she wanted to take pictures with the camera and so I asked her to take a selfie with me.
 We also played some games. 
 The girls learned how to play skip bo.  And then when we got home Jenna taught me how to play and I have to say I'm kind of addicted to it.
 After church on Saturday night, we had to do our traditional family pics.  All was well with the grandkid pic, except Noah didn't want any part of it...
Adam and Aaron... Dorks...LOL
 We realized we hadn't taken a picture of just us four since pre-kids!!  Crazy how time flies. 
 Sunday for brunch, Adam and Jill invited my mom and Bill over, so we got to see them for a couple of hours, which was so nice!  We even ended up watching an A-R vs. NK district basketball game that Jill found in her stack of gymnastics videos.  Does it get better than that?! Haha. 
 We had a good weekend and it was good to spend time with everybody.  The trips there and back were made were better with the dual DVD player that Santa brought.  Woo-Hoo!!